Hi! I was diagnosed with CLL at the end of November 2015, age 45, and am finding it hard to come to terms with this. I would be interested to hear from anyone else with CLL. I am a mum of two young children and am scared to death.
Emelia - I cannot share with you CLL but I can share a fear of death. And hope. And feeling better. And rolling with the crap down days and loving the sparky high days. And nights of nuits blanches as the French would say - white nights sound so much more romantic than going mad in the middle of the night! Perhaps now that you have felt that fear of death - living becomes more vibrant and real and every bit counts? I have been a lazy cow recently as rain and wind have slashed around - so I went under duvet. It was good at the time -but did little to uplift my spirits. I do not have two children to look after so I anticipate your me time is very limited? What will help and support you? Sian
diagnosis my bloods remain stable, only very slightly up on what they were when I was diagnosed. I've been on watch and wait since diagnosis. Originally I had blood tests and saw my consultant every three months. Now I'm having blood tests twice a year and see my consultant annually. This is good having more time i between tests as it's less worrying and the emotional rollercoaster is reduced. I still think about it of course but the feelings are less raw and CLL no longer rules every thought. I'm more angry than anything else, that I can't get life insurance etc! I'm not sure I know what stage A is. Is he on watch and wait? I know it's hard, but my advice to your husband now, after 5 years of living with this would be, don't let it rule every waking moment of your life. Be mindful of it and take steps to keep yourself healthy, but also remember that you may stay at this stage for the rest of your life and into old age. You still have a life to live so don't let CLL rule it. Good luck
Thanks for the reply. He is on watch and wait. Has suspected appendicitis two weeks ago, spent 3 days in and out of hospital having blood tests and CT scan then he was diagnosed. Just had another CT scan and we're waiting for results. We're only 49 with two children aged 24 and 19. As they are both working and independant we started to go away more, bit more cash etc then CLL knocked at the door!!! I'm struggling with emotions but he's quite positive. We are healthy, eat well and both exercise but we're going to be a bit more on it from now. We have critical illness cover and have put a claim in, hopefully pay off things to make life easier. Not sure if stage A watch and wait qualifies for a pay out - does anyone else know if it is?
Carry on doing what you're doing. No reason to stop going away or anything. I don't know about the critical illness policies, but most life insurance policies don't pay out on CLL. Mine doesn't. I think it depends on how old the policy is. My children are only 14 & 13 at the moment. We hadn't told them about my diagnosis when I was first diagnosed as there didn't seem any point and I didn't want to worry them. Later when I had to have blood tests and a CT scan we just told them
i had poorly blood which they accepted. Earlier this year my son - 14 - was angry that we wouldn't let him go out in groups like his friends were and couldn't understand why we kept banging on about social distancing etc so we had to tell him which was hard. Really, apart from the worry, my life hasn't changed at all. I've been using Staysure for travel insurance and they accept CLL as a pre existing condition.
Hi All , I am new to this forum so here goes. I was diagnosed with CLL 16 years ago , I had no idea I had anything wrong with me ( no symptoms) this was just picked up on a routine blood test . At first I had blood tests every 3 months, then every 6 now every year just to keep check on my blood cells . Nothing has changed in all this time . I was diagnosed with grade 3 breast cancer in 2018 and had chemo and Radiotheraphy but all this Never affected the CLL , so hopefully it will stay stable. I hope this reassures you if you are worrying. Take care.
I hope your husband is doing ok & is coping with his diagnosis well?
I have recently been diagnosed with CLL/SLL & it all seems very surreal. I have symptoms & CT scan picked up widespread swollen lymph's but am going down the watch & wait route for now. I am not working at present as was constantly getting infections which now makes sense. I too have critical Illness cover, was wondering if it would cover me. Did you manage to claim successfully.
